Monday, March 1, 2010

Dubiously sane things I have done concerning Max...perhaps you can relate?

I was e-mailing with a mom over the weekend; her baby had a stroke at birth, like Max. Until recently, she had measured her baby's head every three days because she worried about microcephaly, a condition in which a head is abnormally small (it indicates the brain isn't developing properly). She joked about getting committed to the psych ward, and I knew just how she felt because I've done that.

For the first year of Max's life, I was obsessed with his head size. It was small, very small. Still is. I'd regularly measure it and dread visits to the neurologist. When Max needed winter hats, I'd buy two sizes: one in the age-appropriate size, one in infant size. Inevitably, only the infant hat would fit, even when he was three. But I kept buying the age-appropriate size hat, as if I could will his poor, sweet little head to fit into it. At some point I finally quit freaking about Max's head size—as long as he made good progress, I decided, that was all that mattered. And he has, thankyouGod, he has.

Over the years, I have done some wacky stuff related to Max, driven by anxiety, fear, terror, love. For the first few weeks after Max was home from the NICU, I slept on our living room couch with him resting on my chest. Literally. I felt I needed to be that close to him to make sure he was still breathing. I can still vividly recall the day my boss at the time called to check in on me. At some point, I mentioned that Max was sleeping on my chest every night. Awkward pause. "Oh! Is that safe?" she asked, logically. I must have seemed so strange.

I have also reached into Max's crib as he slept to massage his hands in the hopes of loosening them from the tight grip of cerebral palsy, stared obsessively at other kids' hands in the mall to see just how open/functional they were in comparison, spoken to Max in different accents to see if he'd notice and, once in a fit of desperation, ate an entire jar of baby food (bananas) to show him how to chew right. Dave has been my partner in special needs lunacy; when Max was little, he used to gargle water to distract Max while we were feeding him so I could get in some food.

OK, here it is, your chance to share the out-there things you've done. That way, they can haul us off all at once to the loony bin!

28 comments:

About the head size, (I have told this to another friend blogger too).

Children with Angelman syndrome have microcephaly - when Dimitri was first sent for the genetic tests, I mentioned the main symptoms to our OT at the time, including micropcephaly - he said "but you've got a small head too"

Really I do, but I was quite distressed when he pointed it out! I'd been hoping it wasn't that noticeable, but I'm 5'10", so it's even more obvious.

How long do you have my friend, how long do you have...lol. Let's see, when my son Tanner was born, he never cried, never, I remember the nurse before we left the hospital saying, crying is good for them cleans out and exercises their lungs..so for the first few weeks, I was convinced my son was going to drown because he never cried. So the poor dear, I'd tickle his feet till he cried in aggitation, patting myself on the back the entire time, convinced I was saving his life. Stupid nurse for putting that idea in my head. Tanner has apraxia and is slightly autistic, along with having sensory issues. He would never take a bottle or paci, never. I breastfed and then we went straight to...THE bottle....yeah, don't ask me how we determined this to work, but the first "bottle" he ever drank out of was a Corona long neck beer bottle...filled with water I swear...but for some reason, he could grasp that and not spill a drop. So devious mama that I am, I was sure that if I wrapped it in some cute cloth and taped it, it would not look like a beer bottle, yeah right, lol. It now just looked like I was some low life redneck (which I kinda am, the redneck part anyway)trying to hide the fact that it was a beer bottle....oh my the looks I got...and the stories he can tell when he's older, when he looks back on these photos.

I study MRI films as though I can distinguish brain tumors from health brain tissue. I can, by the way, when it's at the site of the actual tumor. I can tell if it's grown or not. But the blood vessels and other things that highlight with contrast? Good God. I have driven myself and countless radiologists INSANE...especially when the scan was for Foster, who does not have a brain tumor, but I was thoroughly convinced he did.

I slept with Romy on my chest too! There's times when I tense my leg muscles as tight as they can go and try to move around and walk to see how Romy must feel. I'm sure I look like an idiot trying to do all that, but I'm just trying to grasp what it must be like. Glad I'm not the only lunatic!

I did the chest sleeping thing too, it probably wasn't safe but it was the only way I could get any sleep and needs must. I have done some daft things in my time, the list is too long to go into:) Suffice to say I will be committed along with you:) Jen.

When Faith was a baby before she got her feeding tube we would sit in a living room chair with a boppy in my lap and her on the boppy and carl would stand behind me and do stupid stuff for....well...sometimes hours. While I tried to get food down her throat. We usually ended up wearing all of it after she would puke it all up. LOL! Oh I would weigh her obessively too. B/c she was so slow to gain any weight, sometimes 3 or 4 times a weeks, we would drop her on the scales to find out if anything went down to her stomach. I also spent a ridiculous amount of time watching her closely to see if she was having seizures, every little movement I hyper analyzed.

When D. was in the NICU, I stopped drinking coffee. In my head, I had made this elaborate deal with God, where my not drinking coffee translated to God healing my son. It made absolute, perfect sense at the time.

I slept with on the couch with Emmett on my chest for the first four months of his life. I was certain that if I left him alone, he would die. I would wake with a start every 15 minutes or so and make sure he was still breathing. I was also completely obsessed with this fontanel. Was it bulging (a sign that the shunt wasn't working)? was his fontanel sinking in(a sign of dehydration)? Did it look different than it did 5 minutes ago? Did he throw up because the shunt caused an infection? And on and on....

What a gift you have. For years, I have been thinking of myself as crazy for the things I did after our son came home from NICU 13 yrs ago.

Now, this is the first time EVER that I have laughed about it. "Special Needs Lunacy". You must write a book, so we can all just forgive ourselves already. Why didn't I ever think there was a reason for my behavior before? I just thought, "I'm nuts."

I slept right next to my son for his first 2 years. No lie. Right next to him. With my hand on his chest in case a "silent" unnoticed seizure would stop his breathing.

Unbelievable. I feel like you saved my life today. You make me cry, Ellen, where were you 13 yrs ago?

I would take Little Man's temp daily. For what reason, I have no idea, but to this day, I still wake up several times a night "just to make sure" that both boys are still breathing. I can't tell you how many times my 3 yr. old has said "stop poking me!" in his sleep. One day, I hope my Little Man will say the same thing:)

My oldest son has always had a noticeably BIG head. Since he was a typical infant it was cute and everyone commented about it, especially my sister-in-law whose baby was almost exactly the same age and, of course, had a perfectly sized head. When my son turned out to be a late talker with some other issues (Asperger's, ADHD), I immediately found sources saying that a BIG head is correlated to autism. Thank God my son is developing well at age 10 and is not currently receiving any special services, but I remember how freaked out I was by the BIG head concerns.

My youngest son has apraxia & autism spectrum and is not very verbal at age 5 - I remember one of his OTs in EI being concerned about his abnormally small outer EARS. Whatever his issues are, I don't think the size of his ears has anything to do with them.

We started to teach Skyler baby signs (and we still do, they are awesome) and when he was about 8 months old he started shaking his head (the way we do to say no) and he shook his head a lot. Because his condition can cause seizures and we had never seen an infantile spasm before, we made an appointment with the neurologist who watched the video we had taken of him doing it. The neurologist said he was glad we were so concerned about our son, but in fact he was simply gestering "no" like we'd taught him.

Ohhh....just reading about that poor mama measuring her babies head made me so very sad, I did the same thing to Noah, daily...and I felt insane each and every time. I was also obsessed with head size as it was the one sure fire "indicator" I could check myself, when Noah would wake for his feedings in the middle of the night I would stare at his head- drowsy, sometimes it looked small and sometimes it looked huge, which would send me in to another panic about hydrocephalus .... really not what I envisioned when thinking about being a new mom.I scoured every.single,medical.journal.article.blog I could on neonatal seizures, and read them obsessively- awfulI was a tummy time nazi I did not enjoy those first few months and that is when I started to blog, in case one day someone would look me up....and you know what, I hope they do b/c I have a 2 year old typical little boy who is a 1 in a million miracle....I wish I had read about that possibility back in 2007!

Wow this brings back memories. Thank you everyone for sharing. I remember well the things we'd do to get food down my son. His tray was always full of toys that we hoped would distract him enough that we could sneak in a bite or two. We would sing songs, pretend bees were diving in around him, etc. We didn't know it when he was a baby, but he has hypotonia, global apraxia, sensory and cognitive issues. Very sensitive gag reflex as a baby. He would throw up at almost every "meal." The doc made us keep a schedule of his eating and pooping for months. And that's exactly how we labeled the chart: "Mateo's eating and pooping." It would take him an hour to drink a 2 oz bottle.

Later on, I would gaze in wonder at toddlers eating french fries at McDonalds. Wow, it must be so great to have a kid who can eat a french fry.

Now he's just turned 7 and the eating issues are gone, but he still has various delays. My latest anxiety is figuring out how to help him have some friends. I'm on a toy-buying binge, trying to make our house cool, lol, and I've started sending little emails to other moms, trying to subtly hook up their kids with mine. It's all taking me back to the social awkwardness of my youth, gah. We did successfully make a playdate for next week, hooray! I'm way more excited than my kid. Thanks for indulging my ramble. Onward, moms. :-)

I do to many crazy things to count, but one my husband does that always makes me laugh is his karate. Whenever we need to distract Maisy or keep her still while sitting he will do this crazy karate kick stuff that makes all of us laugh and keeps Maisy in place, even if she is cracking up.

ha ha, I still don't think what I did was crazy, but who am I to judge...

Mac was a projectile vomiter... literally it went 6-8feet each time and it happened 6-8 times a day. One night watching CSI we saw one of the characters in the morgue with a massively decomposing corpse and she was 'grinning' while working on it. When they asked why she said "you physically can't gag when you smile"... OMG we used to make Mac laugh by tickling him to stop him from vomiting when the gagging used to start.

Thing is... it works, smiling literally quells the gag reflex - we saved ourselves so much cleaning and 're-feeding' using that method.

I obsessively try to find blogs and/or websites with kids that "seem" like my son. I monitor their progress and try to see if there is anything else I should be doing.

Also, Leo wouldn't latch to breastfeed. My daughter was a natural for almost a year. I crazily pumped EVERY meal for 6 weeks before he finally latched. Everybody thought I was nuts, my life revolved around pumping, feeding, barely storing, and cleaning bottles. It was crazy to try and stay ahead of him! My husband said he wanted me committed and said to stop trying...glad I didn't...he nursed until he was 13 months old! ;)

I have a child with Rubenstein Taybi syndrome. She has angulated thumbs..of course I thought if we fixed the thumbs she would be fine and not have RTS any more. One issue RTS kids have is constipation...I became obsessed with getting her to poop...you know...making her do the bicycle legs, forcing prune juice. I knew if I could solve the constipation she would be fine!! :)

I know that I tend to obsess so I have to be careful about the information that I read or find out. I am on a need to know basis with our doctors...it is what I have to do to stay sane. If not I would be obsessing about tethered cord, tumors and so many other issues!

Oh my! I am the head measurer!! I feel so famous for being on the blog. Sadly, I am going to H*ll because I didn't make it through lent without measuring. But hey, it's better than a crack addiction, right?!

*chuckle* I had a normal birth and baby, and Gwen slept on my chest for the first month or so, and she's 2 1/2 and she still sleeps with us. In fact, I kept a diary the first 2 weeks of all her nursing, which breast, her diapers #1, or #2, and what time. I'm sure the pediatrician thought I was insane. ;)

I know this is an old post, but I couldn't help but post because it brought back some memories. While Perron was in the NICU I had it drilled into my head that preemies have frequent periods of apnea and bradycardia. I became obsessed with whether he was breathing and oxygenating properly. My favorite saying was "Are his lips turning blue or is that just a shadow?". Seriously! I would obsess over the angle of his head and neck because I was so afraid he would pinch off his airway.

Whew! I am glad those days are over. Like being post-pregnant hormonal isn't bad enough....

i relate to everything you write. i feel like i need to go to a mental institution lately. i measure my son's head as well. i get terrified about it. i weigh him obsessively too because he was born 5 weeks early. i also stare at other kids' hands/fists. i even go on facebook and look at my friends' kids who are only 3 months old and clasping their hands together - i go & download these photos and stare at them. i then go and email them to my husband and i'm like, "OMG LOOK! THAT'S ANNA'S KID AND HE IS YOUNGER THAN NOAH AND HE IS CLASPING HIS HANDS TOGETHER!!! WHAT THE F ARE WE GONNA DO!?!?!?" and then i sit there depressed as hell. i don't even go on facebook anymore because i can't stand seeing my friends' kids photos. their healthy, normal kids. i also used to google every single word on my son's MRI report. one particular finding on my son's MRI report is "wallerian degeneration" and i googled that and guess what i found - it wasn't pretty - "100% of neonates who have this end up with severe motor outcome" so i never googled that ever again but of course i still can't get that 100% out of my head. i feel pretty doomed & hopeless. i obsessively ask other moms (that i find online) about what kind of symptoms their child had and when they started, etc. so i can compare them to my son's because i'm so desperately looking for hope that maybe he'll be ok. i obsessively massage his hands as well. i even kiss his right cheek more than his left because the right is the affected side. i am so crazy. also, i do this thing where i constantly think of the WORSE case scenario because i think i have some weird mentality - like, if i think of the WORST possible thing happening, it can't possibly happen. it makes no sense at all. i really do feel insane lately. my pediatric neurologist even gave me a phone number to a psychologist at my son's 3 month visit because that's how crazy i come off.

oh and i also look at photos of my baby and stare at his head size. in some photos, his head looks kind of small so i start panicking. and then i'll look at another photo (a closeup of course) where his head looks normal and i feel better.

I am totally getting this post & comments. My son is 2 years old w/ ASD & has a large head (I also read the studies linking large heads & Autism - well after he was diagnosed, of course). Every time we'd take him to the pediatrician & they'd measure his head, they'd do it twice b/c they couldn't believe it was correct. Yep - he's got a huge head. He hates having shirts put over his head for this reason.My son was also a lousy sucker & eater his first few months - we cheered every mililiter for awhile & then once he finally got to regularly drink more than 3 oz, it got better - but for probably 6+ months, a feeding would take a half hour. But it was a half hour of calm in the midst of colic & general fussiness.My insanity has always been watching other parents with their "easy" kids with more jealousy than I ought to. I looked at a photo album of a coworker's recently, which clearly displayed a very happy & well adjusted baby in settings where my son would not be at all comfortable - I almost cried. I want children to be happy & easy for their own sakes & their parents' - but man, why can't my kid be that happy & easy?